Monday, 30 May 2016

I decided to give up social media to fundraise for The Christie because of my stepfather - Laura Sinclair

Laura Sinclair, Christie fundraiser

Laura Sinclair
I decided to fundraise for The Christie because of my stepfather, Bill, who in August 2015 was diagnosed with stage four head, neck and throat cancer. It came as a shock as he went from a healthy man who would go fishing every week and tend to his allotment daily, to being in a wheelchair after a spinal stroke and then to being told he had cancer.

He underwent radiotherapy at The Christie during the remainder of 2015. The treatment he received from The Christie was incredible. Everyone from the CALMS team who helped him feel relaxed and at ease during radiotherapy, to the staff in the canteen and the nurses and doctors who treated him went above and beyond what we expected.

I wanted other families going through this to get the same treatment, so with the support of my friends and family I have come up with different challenges to fundraise for The Christie. These challenges have included hiking (the Yorkshire 3 Peaks, 50km a day for 5 days), a triathlon, giving up alcohol for a month and in February 2016, I decided to give up social media for a month.

The term social media actually seems to have a flexible definition to people. What does it include? Facebook, Instagram and Twitter seem the obvious choices but where do LinkedIn, SnapChat, WhatsApp, Couchsurfing and Strava fit in? So after many discussions with people I made my choice to include Facebook, Instagram, Twitter, Snapchat and any other similar platform. I decided to carry on using WhatsApp due to having several international friends and not being able to contact them otherwise, and as a final year PhD student looking for a job, I decided to keep on using LinkedIn for professional reasons.

Day one involved the removal of all social media applications from my phone, to remove all temptation. One positive was that the battery life of my phone increased significantly. I deactivated my Facebook account as it was the most tempting to check, and partially because despite my friends being wonderful, I was a little bit afraid they would spam my Facebook wall with Star Wars memes!

I kept checking my phone throughout the next few days for notifications which never came, as an active (perhaps too active) member I would get a lot of notifications each day. Finding ways to contact people was frustrating and sometimes I had to ask mutual friends to send my phone number to friends to get in contact.

When I went to London for a conference I would normally have sent snapchats detailing every aspect of my journey, but this time I enjoyed my time and took in the sights. Inane thoughts normally reserved for Twitter had to remain in my head or if a little bit interesting I texted them to my friends.

A few days into my challenge my family and I went to North Manchester hospital for the results of the CT scan for Bill to see if the radiotherapy had worked. Anyone who has ever been in this position knows how challenging waiting for the results can be, and in the days leading up to it I just never felt like I would be ready to hear the results.

The family (Bill, my mum, Bill's eldest daughter and her husband and me) were taken into a room with the consultant and several nurses. The radiotherapy had shrunk the original tumours but unfortunately, and there was never going to be an easy way to say it, the cancer had spread to the lungs and is now terminal. Bill remained strong and positive throughout this, and was determined to make the most of the time he had.

If I’d still been on social media that’s how I might have told people of the news but having given it up it meant I had to speak to people directly and contacting people to tell them something like that is never easy.

As time passed during the challenge, I eventually found I was checking my phone less and less.

My friends would text or call me, and some sent emails. I began to enjoy not being connected to the world so readily. Sometimes people would talk about things they saw on social media, but I didn't really feel left out.

On a training hike my friends kept asking if I had seen such and such a message, forgetting I had left the world of Facebook. I tend to organise the hiking trips with my friends, and a lot of social gatherings via Facebook, so I had to pass on messages to people or trust them to make plans instead.

The worst part of giving up social media was realising how much I rely on it to connect with friends and family, I didn't have phone numbers for many of them as we would use Facebook messenger or Snapchat. I did miss sharing good news on Facebook during the month, such as my first job offer, but learning to share less has been better.

By having time off social media, I read more books, cooked more meals (I even learnt to a bake a pie!) and was more productive at work. I set aside time in my day to reply to non urgent requests and texts, and didn't feel obliged to respond instantly to messages. You soon lose the fear of missing out on social media and appreciate the simpler things.

What I learnt from the challenge was to have back up ways to keep in contact with the people you care about, although social media is a good way to be in contact with friends and family. I learnt I needed to be more selective in what I share on social media, and that every aspect of my life doesn't need to be shared. I learnt to have more real conversations with people and appreciate my friends and family in person more. If you give up social media for a month you'll have more time for yourself and value your time. And the big bonus is that the battery life on your phone will increase!

If you’d like to support my fundraising, please visit

Sadly, Bill passed away on 1st June 2016. Our thoughts and sympathies are with Laura and his family and friends. 

Monday, 23 May 2016

I realised that I had completely underestimated the effect having cancer would have on me - Nina Jackson

Nina Jackson, patient representative on the Macmillan Cancer Improvement Partnership (MCIP)

Nina Jackson
I was diagnosed with breast cancer at the Nightingale Centre at Wythenshawe Hospital in May 2012 when I was 45. I had the lymph nodes in my left armpit removed. I then had chemotherapy and radiotherapy at The Christie.

In April 2014 I had to have a mastectomy. I chose to have a reconstruction at the same time using fat from my abdomen. This was carried out by the plastic surgery department at Wythenshawe. I then had further chemotherapy at The Christie. 

It is now over a year since I finished my treatment and so far all is well. Getting back to work full time and doing my full range of work was an important milestone. Luckily I have a supportive team manager and an understanding team.

I have been lucky compared to some cancer patients, but I do have some lasting side effects including some permanent hair loss caused by the Docetaxel chemotherapy I received. I have mild lymphoedema in my left arm. It is well managed, but I have to take particular care of my arm to prevent problems developing. This includes massaging it nightly to encourage fluid to drain. I have also developed osteopenia due to my treatment. I take medication to hopefully prevent this from becoming osteoporosis. I have to make sure I eat plenty of calcium rich foods and do weight bearing exercise.

These side effects and my operation scars are a permanent and daily reminder that I have had cancer. When I was first diagnosed I said I was going to treat it as an isolated incident. However, as time went on I realised that I had completely underestimated the effect having cancer would have on me. Without being too dramatic, I didn’t anticipate that it would become part of me.

In the autumn of 2013 I went to a Macmillan workshop to give feedback on my cancer experience. I felt that I had had a mostly positive experience. I thought it was important to share good practice and what had worked well. Following the workshop I became involved in the Macmillan Cancer Improvement Partnership (MCIP) as a patient representative.

This is a partnership between Macmillan, the three Manchester clinical commissioning groups (CCGs), The Christie, St Ann’s Hospice, the main hospitals, Manchester City Council and people affected by cancer (patients and carers). The aim is to improve the experience of everybody affected by cancer in Manchester at every stage of their journey.

I have been involved in the ‘Primary, Palliative and End of Life Project’. This project developed a locally commissioned service which included identifying clinical and non-clinical cancer champions in each GP surgery, providing training, making sure cancer reviews happen and improving end of life care. The idea was to improve cancer services for patients and their carers at the GP level. This service has been a recognised success with 90% of GP surgeries completing the standards.

I was able to give the patients’ point of view using my experiences, ensuring patients’ needs were always taken into account.

As I had never been in the hospital system before I did not realise that my GP would be involved in my care. One area I felt strongly about was that GP surgeries should contact all patients within two weeks of their cancer diagnosis to say we know you may not be able to take it in yet, but we are here and can offer help. This became part of the locally commissioned service. I am particularly pleased about this as services can be improved but if patients aren’t aware that they exist they won’t be used and won’t be able to help the people they are designed to help.

In November 2015, MCIP and The Christie hosted a ‘Living With and Beyond Cancer’ event for the clinical and non-clinical cancer champions in Manchester Town Hall. They asked me to speak to give a patient’s view of living beyond cancer. Although it was rather daunting speaking in front of 100 people it was a good experience. I and the other patients who took part received positive feedback. Hearing true stories from real people helped give GP staff an insight into the issues faced by people affected by cancer. This increases awareness of patients’ needs.

I was able to talk about how I had found the effects of cancer don’t end when treatment ends. I still think about cancer more than I expected to. The fact that I have had treatment twice makes the worry of reoccurrence more real. I particularly worry about the cancer returning and not knowing it has. One unexpected experience was, when at one point two friends had just found out their cancer was terminal and another had just been diagnosed with secondarys, I felt bad for getting better. Some people laughed and thought I was crazy. It wasn’t until I spoke to another friend who had had similar feelings, that I was reassured and found this was not necessarily an odd reaction. 

A positive is that I have made some new friends through having cancer!

I have felt listened to and that my contribution has been valued. I feel proud that I have hopefully helped improve the cancer services and experience for other people affected by cancer in Manchester.

I will now be involved in phase three of the MCIP programme, which has been set up to improve breast and lung cancer services.

I have received treatment from my GP, district nurses, both the Nightingale Centre and plastic surgeons at Wythenshawe and The Christie. I know from my experiences and those of other patients that communication between all of these sectors is vital. They are all part of both the treatment and moving forward jigsaw. Hopefully the passage for people affected by cancer will run more smoothly.

Macmillan encourages people who use their services to give something back. This is something I have wanted to do. It has been rewarding and given me a sense of achievement. There are lots of opportunities and ways to do this – it doesn’t have to involve speaking in front of 100 people! Keeping the real needs of patients at the top of the agenda is vital. Every person’s experience is different, so the more people who become involved the more this can happen. Unless you have had cancer you really don’t know what it feels like from a patient’s point of view.

You can find out more about MCIP and how to get involved at 

Monday, 16 May 2016

It’s ‘OK to Ask’ is a really important message to patients everywhere - Geraldine Peddie

Geraldine Peddie, Christie patient

Geraldine Peddie
was diagnosed with Non Small Cell Lung cancer in December 2007. The lead up to the diagnosis took nearly three months, and this is my story.  

In the autumn of 2007 I could feel a small hard lump just above my left collarbone. I went to my GP who asked about my general state of health, was I losing weight?  Did I have a cough? How was my appetite? As all seemed to be fine apart from the lump we arranged a three week follow up. At the end of three weeks I returned and was concerned as I felt that the lump had increased in size and I thought there was also another lump there. As there were no other symptoms he just advised me to monitor it and come back if necessary.  

Two of my close friends had experiences with lumps. On both of these occasions it had turned out to be cancer and on one occasion her GP had said she didn’t think it was anything to worry about! I asked for a second opinion and was duly referred to a haematologist.  

He took several blood tests and asked for a chest x-ray. After the x-ray, things went at a much quicker pace, with a biopsy and CT scan within three weeks. I had been a smoker but only a very light smoker and had only smoked for about 10 of my 51 years. On 27th December 2007 I was given the diagnosis.

I am so lucky to be alive. The survival prospects of this cancer are very poor. Nearly 80% of those diagnosed didn’t survive for the first year. I made a commitment to myself that I would never regret doing anything and I would definitely never regret not doing anything. I was also fortunate to be symptom free for over six years. In this time I travelled extensively and I really had a great time even though I was “living with cancer.” In 2009 I met my husband and we got married in 2011.

Over my eight years of almost continuous treatment with eight different lines of treatment I feel I have had the best attention that anyone could want for. I became a patient of The Christie in March 2015 when I was enrolled in a clinical trial.

The trial drug was very much targeted to my cancer. Although it is lung cancer there are several types of lung cancer and within each type there may be different properties. I was fortunate enough to have a protein referred to as EGFR (Epidermal Growth Factor Receptor). I had been treated with two previous ‘targeted’ therapies for those who are EGFR positive to great effect. The trial drug was the third generation of this type of drug, especially developed for those who have acquired a resistance to previous drugs.

This has been quite literally a life saver. I had almost exhausted all approved conventional treatments and my cancer was progressing unchecked. From day one of the trial I felt relief and benefit. Dr Krebbs and his team are so attentive and caring. They are always only at the end of the phone for any questions I have and I have felt in very safe hands for the last year.  
Although experimental, the treatment has been very successful with a huge reduction in the size of the tumours initially. There is now only one ‘stable’ tumour left and I am feeling very well.  

There is a big likelihood of the cancer becoming resistant to this treatment, but I am hoping that day is a long way off yet. When that day arrives I would be very interested in what other trials I might be suitable for at the time.  

If anyone reading this has cancer or knows someone who has been diagnosed with it, I would urge them to always ask about clinical trials. The theme for International Clinical Trials Day on 20th May is that it’s ‘OK to Ask’ and I think this is a really important message to patients everywhere. Going on a clinical trial can give you access to the latest treatments and also helps doctors and researchers to develop more effective treatments for future generations.

For further information please visit 

Monday, 9 May 2016

I was very pleased to be asked to be a ‘face’ of The Christie and to raise awareness of ways to prevent healthcare associated infections - Wayne Gilbart

Wayne Gilbart, Lead infection control nurse

Wayne Gilbart
As an infection prevention and control nurse I was very pleased to be asked to write a blog about the important work infection control does.

I want to raise awareness of ways to prevent the transmission of healthcare-associated infections. These are infections that patients get when they are in hospital. Hand hygiene is considered the single most important way of preventing the spread of these infections. 

I work as part of a team at The Christie to look into cases of hospital infections, but also to prevent them happening. Infection prevention means ensuring that good hand hygiene takes place and working with staff to ensure they apply standard infection control precautions (including good hand hygiene and appropriate wearing of personal protective equipment when dealing with body fluids) to all patients and specific precautions to patients who have a known infection. 

When we talk about hand hygiene we mean washing your hands with soap and water or decontaminating them with alcohol-based hand rub. In most circumstances alcohol based hand rub is a great way of cleaning your hands and only takes about 15 seconds. We do ask staff to clean their hands with soap and water for infections like Clostridium difficile.

These infections can have a profound effect on a patient and can lead to additional treatments and a longer stay in hospital. Healthcare-associated infections cost the NHS over a billion pounds a year and cause profound distress to patients.

I am very proud to be a member of staff at The Christie where the issue of good hand hygiene is taken very seriously. Our infection control link workers carry out observational hand hygiene audits on a monthly basis and if there are any issues in a clinical area we will work with the team to ensure good hand hygiene standards are being maintained. 

We also promote good hand hygiene technique through the use of the Sure Wash system. My colleague Gary Thirkell describes this as ‘Wii Fit’ for your hands - it’s basically a way of teaching good hand hygiene technique. This is important because research has shown that people don’t always clean their hands as well as they should, missing out some bits. Since we’ve been using it we have had very positive feedback from staff, patients and relatives who have used the machine.

On 5th May, The Christie took part in World Hand Hygiene Day, a World Health organisation (WHO) initiative. This year we got staff to sign a pledge about hand hygiene with the tag line ‘We believe in clean care #safehands’. This helped to demonstrate to our staff, patients and relatives that we remain strong in our commitment to clean hands. Roger Spencer, our CEO, was the first person to sign the poster. 

The ‘Clean your hands’ poster is designed to be seen by everyone and I believe that everyone has a role to play in infection prevention and in promoting good hand hygiene. I regularly visit the wards and departments in the hospital to engage with staff about infection prevention and the posters have ensured that my face and the message of my team is being seen by members of staff that I have not met yet. 

I believe that the infection prevention team has a responsibility to hospital staff to be accessible to them for help and advice and to be excellent communicators, so this poster is a great way of promoting our service. I am very proud of my team - Gary Thirkell, Joanne Chambers and Kim Jackson who all do a great job in infection prevention at The Christie. 

As well as staff, it is important that patients and relatives clean their hands and for relatives to stay away if they are feeling unwell (for instance with flu-like symptoms) and I believe that this poster is a great way of engaging our patients and relatives in a conversation about hand hygiene and its importance. Patients and relatives have an important role in reminding staff about clean hands. I have talked to numerous patients and always emphasised the role they can play in hand hygiene.

I believe that we at The Christie have a responsibility to our patients, relatives and staff to ensure the highest standards of infection prevention (including hand hygiene) and patient safety. With the support of our director, Jackie Bird, this poster is just one of the ways the team is seeking to engage in the infection prevention agenda and to remind everybody to ‘Clean your hands’.

Monday, 2 May 2016

The Maggie’s centre is a one stop shop of support run by professionals offering practical and emotional support - Louise Hassall

Louise Hassall, Christie patient and Maggie’s volunteer

Louise Hassall
In 2010, at the age of 37, I was diagnosed with cervical cancer. Nothing can prepare you for what is about to happen to you, your family and your friends both physically and psychologically.

Sometimes all I want is to sit in a calm and friendly environment with people that understand and maybe not even talk about cancer, but to know others around me feel some or the same emotions that I do.

I also want to know that my loved ones have the opportunity to seek refuge in a place that is comfortable, safe and with people who will understand. Often these services are available but can be scattered around and are not always easily accessible at a time when they are required. 

When I found out that a new centre called Maggie’s would be opening I was intrigued as to how this would complement the already great services that The Christie offer. I wanted to know how this would impact me and other patients and how my loved ones may benefit too.

I was therefore excited to be given the opportunity back in the winter to learn more about Maggie’s, meet the centre manager Sinead Collins and see the new building that was just last week opened by Her Royal Highness the Duchess of Cornwall.

On a bitterly cold and rainy Manchester day I met with Sinead, the centre manager, donned work boots, gloves, a high visibility vest, glasses and a hard hat and was taken to see the building in progress. Sinead explained each room and how the finished building would look.

Despite the weather and the unfinished rooms I could already feel the calm and peace that this building holds with much of this down to the thoughtful layout and space. The long area through the centre of the building, and the ability to see an exit or the outside no matter where you are, put me at ease and added to the feeling of being relaxed and calm.

With warming fires and a big kitchen table to encourage a meeting place for those dropping in, it will certainly make for a welcoming experience from the moment you walk through the door.  

The centre is a one stop shop of support run by professionals offering practical and emotional support without the need for an appointment, which is important as you can’t always predict when and what support you need, and in my experience if you aren’t able to get the help immediately you often don’t go back.

I felt like it was a haven away from the hospital despite being a stone’s throw away and a great space to go by yourself or with those who you are with, to just sit with a cup of tea.
I couldn’t help but compare my needs throughout the last six years and the services that will be on offer at the Maggie’s Centre.

In the past my husband and I have come out of appointments often having heard bad news and we’ve had nowhere other than a public waiting area, corridor or the car to digest the information - and that can add to your distress. The opportunity to now have somewhere to go that is on the grounds of the hospital will be a huge help and make a big difference.

During the hours of waiting between appointments and chemotherapy where a patient wanders around the hospital or the local area, I and others will be available at the Maggie’s centre to discuss nutrition or to take a class on managing stress, creative writing or an exercise class such as yoga, tai chi or walking. Being able to take your time drinking tea or just sitting serenely without the time constraints you can feel in a cafĂ© or other public place will add to an improved sense of calmness, and for those who love gardening or find it therapeutic, there is a garden to enjoy and the opportunity to help tend it.

Importantly, the service is available to anyone affected with cancer at any stage, and this includes family and friends who will be made to feel welcome and their emotional needs met too. During many of my operations and procedures my husband pounded the streets of Didsbury, but now he will now have the option to go to Maggie’s where he can chat to others in a warm and welcoming environment and benefit from the services on offer. Knowing that this is available to him already makes me feel better. I believe that the cancer journey can be harder on those supporting you, so Maggie’s will be peace of mind to me and an additional support network to Steve.

The Christie is an excellent hospital, with fantastic staff that do a brilliant job at offering support and services, but the addition of the Maggie’s Centre will add value to my experience and wellbeing as a patient and to all patients, so I am looking forward to using the centre and offering my time to help as a volunteer.